The ALS Association just released the news that the Ice Bucket Challenge has led to significant breakthroughs in the research for the disease. I remember flinching as if I’d been physically punched when I’d hear someone say something derogatory about the Ice Bucket Challenge. Most of those flippant remarks probably weren’t meant to be nasty, but they were personal to me. I lost my best, oldest friend at the ripe young age of 45. She left a 10 year old son. She left her family. And me. When I say lifelong, I mean, when I was brought home from the hospital, we ended up in the crib together. They lived two houses down. We grew up together. We were closer than sisters. She’s my face of ALS.
My Lisa. This beautiful girl. ALS took her.
According to the ALS Association, in 2014, there were more than 17 Million Ice Bucket Challenge videos posted to Facebook alone. They were watched over 10 billion times. Ten Billion! When you think about it, many people had never even heard of ALS before last year. Had you? Now, we hope, that most people have at least heard about it.
When Lisa called me, from the opposite side of the country, to tell me she’d been diagnosed with the disease, my brain wouldn’t function. I just could not comprehend. In fact, I think I told her that I’d have to call her back because I had to go look it up. When I did, I was completely devastated. There was no cure! I knew that it would most likely kill her within five years. Five years? What? How could that possibly be true? We didn’t know how long she’d actually had it because she’d been misdiagnosed, so we just didn’t know.
Her family did everything they could. They spent lots of money taking her on bucket list trips and paying for experimental treatments. I still just couldn’t wrap my head around it. When her brother, who is also my older brother’s dear friend, called to tell me to come say goodbye because we didn’t know how long she’d be conscious, I just felt helpless… wrecked. They explained that she could hear me perfectly, that her mind was just fine inside a body that couldn’t move. She was trapped. My goodbye was not a good one. When her brother told me that she would die because her diaphragm muscles would just stop and she would suffocate, I just didn’t think I could bear it. I regret so deeply that I sucked at saying goodbye. I just held her hand and told her she was my best friend and always would be. I, who is never at a loss for words, just couldn’t find any. The lump in my throat, the rock in my chest, I couldn’t speak around them. I was so afraid to upset her. I was afraid that if she cried, we’d lose her on the spot. I couldn’t stand to see her like that. I drove the four hours home, just aching. And crying for us both.
We lost her a few days before we lost my mom. I know she wasn’t conscious when she died, which brings a little comfort. I know her family was there, and that I was not. I was doing vigil with my mom in the hospital. When we got word that she had died, my brother and I were going to fly up for her funeral. But then, our mom suffered a severe stroke and it was touch and go. We couldn’t leave. Her family understood, but missing her funeral was so difficult. A few days later, her brother sat with my family as my mom drew her last breaths. Our families were that close. Lisa was in my heart, I felt her presence and I drew comfort thinking about them holding hands and moving on together.
ALS is a brutal, terrifying disease. Ruthless. Last year, the Ice Bucket Challenge raised over $220 million for research that has already provided some exciting breakthroughs. So, please, consider pouring some ice water on your head, or those of your friends and family and most importantly making a donation to the ALS Association. Or just make a donation; you don’t even have to get wet! (or move from your computer!!) Even a small donation can help. Do it for Lisa Beth. For me and for the future of your loved ones. We need a cure. Nobody should die that way. Nobody.
Lisa loved little children, animals and her friends. A more kind and gentle soul I’ve never known. I celebrate our friendship! Her memory brings me joy and comfort! Celebrate and enjoy your day. Count your blessings. There are so many beautiful and good things to be thankful for. I’m thankful that I had a beautiful lifelong friend! I’m thankful that she lives on in her amazing son and in the hearts and memories of those who love her. Hug your friends, your family and be good. Do good.
You can follow ALSA on Twitter. Go learn more on their website. Donate here. Together we can #challengeALS.